Most Common Misconceptions/Comments/Questions on Cystic Fibrosis

So I got all these from other Cfer’s via Reddit, the Breathe in podcast by Gunnar Esiason and the Salty Cysters, also thanks to The Cfer’s Guide for some ideas.

  • Are you okay?
  • Do you want a cough drop?
  • Do you want some water?
  • Are you contagious?
  • You’re always sick!
  • Do you have the flu or something?
  • But you’re so young!
  • How long have you had it?
  • I hope you get better soon!
  • Can’t you just get a transplant?
  • So its like asthma?
  • Oh I have ____ so I get it!
  • I wish I could eat like you!
  • I wish I had your weight problems.
  • I knew someone that had that. They died.
  • Have you tried essential oils?
  • Maybe it’s because you’re taking to much medicine.
  • You should drink more water.
  • Have you tried _____ diet?
  • You don’t look sick!
  • I know, allergies are really tough this year.
  • Think happy!

Spoon Theory

So in honor of Rare Disease Day I’m going to write about the spoon theory!

As most of you know I have cystic fibrosis which is a genetic rare disease that has no cure, it’s also known as cf or 65 roses. These past two years have been hard, my health has started to decline and I’ve developed depression and anxiety. I’ve read a lot of stuff and one thing I discovered was the spoon theory. It’s a way for people with chronic illnesses to explain their energy levels in spoons.

Say I have 12 spoons in a regular day

It takes me 1 spoon to get out of bed

2 to take a shower

And so on

When I’m having a bad day I’ll have less spoons

Say I wake up with 5 spoons

I have to prioritize what I’m going to do

If I use more then I have it means I’m working on negative spoons, which then takes spoons out of the next day